Spina bifida registry and urologic care for young children
National Spina Bifida Patient Registry and Urologic Management of Young Children with Spina Bifida - Component B
This project gathers health and treatment information from people with spina bifida to see how urologic care affects young children's bladder and kidney health.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Duke University NIH-funded |
| Lab location | 1 site (Durham, United States) |
| Project ID | NIH-11403053 on NIH RePORTER |
What this research studies
From my family's perspective, this project signs up children with spina bifida into a national registry and collects medical records, test results, and details about bladder and kidney care. Participating clinics enter standardized information over time so doctors can compare different approaches used for infants and toddlers. Joining may involve routine clinic visits, sharing medical records, and allowing clinicians to record urinary tests and imaging results. The goal is to use real-world data to help clinics identify urologic practices that lead to better outcomes for young children.
Who could benefit from this research
Good fit: Young children with spina bifida (and their families) who receive care at participating clinical centers are the ideal candidates.
Not a fit: People without spina bifida or patients who do not receive care at participating centers are unlikely to directly benefit from this project.
Why it matters
Potential benefit: If successful, the work could help doctors choose urologic treatments that better protect bladder and kidney health in children with spina bifida.
How similar studies have performed: Similar national registries for spina bifida and clinic-based urologic programs have helped improve care, although evidence about the best approaches for very young children is still growing.
Where this research is happening
Durham, United States
- Duke University — Durham, United States (Active)
Researchers
- Principal investigator: Wiener, John Samuel — Duke University
- Study coordinator: Wiener, John Samuel
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.